My dd has a 164 TTg and positive ema and they STILL wanted to do the endo. Of course it was positive and left us with all the hospital bills. I wish I had a doctor like yours who would diagnosis without biopsy. I know they might need it for certain things in school/college but for the price of our medical bills, I could have just paid for the college meal plan! Ha!
Posted by 1974girl
on 16 September 2012 - 03:00 PM
I am horrible about having at least one night where I have no idea what we are eating for dinner. Those nights the hubby stops by publix because their rotisserie chicken is gluten-free and in a dedicated oven. What do you guys do? I could use last minute ideas with kids in sports!
Posted by 1974girl
on 14 September 2012 - 08:21 AM
Chick filet is the only place I can go through a drive thru and feel safe. They ate the only ones with a gluten free kids meal. They have grilled nuggets and they get them with tongs and not gloves. Although I have told them of her allergy and they changed gloves anyway. Their chick filet nugget sauce is addicting! Kinda like a BBQ and honey mustard mix. I would double check to make sure the food court has a full menu and does things the same. Oh and the ice cream is gluten free. If your child doesn't want the toy in the kids meal, they can trade it in for ice cream!
My child's GI mentioned lymphoma before the biopsies were even back. He also mentioned other issues and I sat bawling in the room. I didn't like that bedside manner and changed doctors. The new one told me that yes if she ate gluten for 20 years then it might cause it but just an accidental gluten would not. I was almost paralyzed with fear because I have seen my friends child go through 3 years of chemo for leukemia. They should mention that I'd you don't cooperate that it may lead to that down the road but to say it to a parent within minutes of the scope is not necessary in my opinion. We are already worried enough.
I am not sure that it is good that you have had symptoms since 1988 and it was just now found. But that happens here, too, I suppose. But back to your question....the celiac support group leader of my town told me that her father was diagnosed at 98. When she was diagnosed due to DH, she had him tested due to knowing he was always anemic. They didn't even change his diet because of his age. That really didn't make me feel better. I am doing gluten-free so my asymptomatic daughter won't have more diseases, cancer, and not have fertility problems. So to hear a celiac can make it to 98 eating gluten, really bothered me! Honestly, without symptoms, if I thought she could live to 98 I'd "LET THEM EAT CAKE!" But, I don't. But the thought crossed my mind! I am sure there are a zillion others who don't make it to 98. Well, good luck with your new diet. Did your country diagnose you by blood alone or biospy? Just wondering what other places do.
I say that tongue in cheek of course. I have a friend who has Lyme disease. You can tell her any symptom and she will tell you that you should get checked for Lyme disease. It seems we kinda do that in the celiac community, too! I don't even have it myself but my daughter does. But I find myself telling people they should get checked.
"My joints hurt in the morning." --- Oh...you should get checked for celiac. It can cause joint pain. (or old age can do that, too)
"My daughter has a belly ache."----Oh you should get her checked for celiac. (Or she might just not want to take that math test)
"I have an itchy rash." --You should get tested for celiac. Oh wait...it just started after you opened the pool. Oh, it was the chlorine? Oh, ok. My bad." HA HA!
"I am depressed." ----seriously, I told my aunt to get checked for celiac but honestly it could be that her SON has not talked to her in over 3 years and with holding her only grandchild.
I say all of this because I wonder if I am the only loon that does this. I don't want to be THAT person like my Lyme friend. I don't want everyone to have celiac. I know everyone does not have it. I just read on this forum where someone asked about neck and jaw pain. I have been tested and negative but have had a crick in my neck for 8 days. Ohhh....do I have celiac or maybe it was my new pillow? Please tell me I am not alone!
I see you have plenty of good advice but I thought I'd throw mine out there. We batter everything in egg and roll in the gluten free bisquik. I make the best motzerella sticks that way, too. Just buy the string cheese...dip in egg, bisquik, egg, bisquik and deep fry. (double battering keeps the batter from just floating off in the deep fryer) I don't double batter my chicken though. All the "reg" eaters in the house all love it...can't tell the difference. I just made fried donut holes with it this morning rolled in powdered sugar. We are in the South and deep fry everything. : )
I found a library book today for my daughter about having celiac as a preteen. I read it first. It was very accurate and informative. BUT...they said something in there that I have never thought of and I wanted to pass it along. You seasoned celiacs may already know this trick. When a restaurant makes a mistake and brings you a salad with croutons....dump the dressing on it and then send it back. That way, they can't just thump them off in the kitchen and give you the same salad back. If they bring your burger on a reg. bun, cut the burger in half and then send it back. That keeps them from just taking off the patty and throwing it back on a plate. I had to send back her talapia once when they put a breadstick on it. (I even heard the waitress tell them to leave it off. But they do the same thing over and over so it was habit.) After I sent it back, I asked my husband, "Oh will be know they didn't just take off that breadstick?" He said, "We won't." So now I have a plan!
I am going to give you permission to whine. I have an 11 yr old celiac. I have vented here only to be told that I needed to get into counceling. But I don't. I just need to be heard. It is hard to take a child's food everywhere. It is even harder to deal with the emotions that come with them feeling different. I don't tell my child to grow up or suck it up. I tell her that I wish I had it instead of her but that we have to do this thing. Moses got tired of holding up his arms (as long as he held them the battle was won)so Aaron and Hur held them up for him. Sometimes, we just need an Aaron or Hur to old up our arms so we can keep winning. I'll hold yours up because today I can. Tomorrow you may have to hold mine up.
That doesn't sound good. It sounds like lymphnodes to me. I have always heard if you have swollen lymph nodes and night sweats to get to the doctor ASAP. I don't mean to scare you but I hope you get it checked out.
We go to a local place about once a month. They have a seperate oven, utensils, and toppings. So far so good. But...every single time, I quiz them to make sure nothing has changed. My kids get embarrassed that I ask the same person the same thing but I don't care. The waitress did tell me that they had a lady call back and complain that she was sick but they watched her cut her child's pizza and then cut hers! So remember.....don't touch anyone else's pizza. : )
Being disabled and low income doesn't mean that your parents can't help you have a safe enviroment. Don't give them a pass on that! Don't use the toaster...period. You can't get it clean enough. Line your pans with tin foil and cup cake liners for muffin pans. You can still take out the food from the pantry/cabinet, clean the shelves, and make you a big shelf just for you. I have read to make it the highest shelf so gluten won't accidently fall on your stuff, too. Put their flour canisters at the very bottom! I bought a $1.50 bin at Walmart for my celiac child's snacks and that whole shelf is gluten free stuff. I think things get clean enough in hot water so we all share the same plates and utensils. If cleanliness is also an issue, then ignore me. You will get zapped. There are plenty of cheap recipes online. www.glutenfreeonashoestring.com has some good ideas. You really have to just get your parents to agree to eat their gluten and then wash their hands and counters and try to help you in every way possible. We have a mixed household and it is working fine. But I bend over backwards to make my daughter safe. If I was disabled or low income, I'd do the exact same backwards bending!
I cook gluten free dinners for everyone but my husband eats gluten for breakfast (Nutrigrains or something) and then he can eat out for lunch if he wants bread. Only one daughter is 100% gluten free. The rest of us are not. I do have 2 toasters though. My nutritionist (who also has celiac herself!) told me that hot water and soap will remove gluten and so I didn't buy 2 sets of pans,utensils. I did buy new blender, toaster, and muffin tins.